Discussions By Condition: I cannot get a diagnosis.

Spreading joint pain, Raynaud's, and no answers.

I'm an older teen and for years have experienced Raynaud's Phenomenon in both hands, with cold and numbness followed by moderate to severe joint pain, swelling, and redness across all knuckles. Recently, the pain (but not the redness) has become almost constant, and, over the past few months, other joints on my right side have started to ache. My right hand is constantly cold to the touch, even when my left hand isn't. I get joint stiffness in the morning throughout my hands and elbows which generally subsides in an hour or so, but the pain lasts all day. I also get small rashes across my arms, which are not painful or itchy and disappear within a day. I have seen multiple doctors and specialists and have gotten no answers. All blood tests have come back negative. I was recently admitted to college to major in music and am now losing my ability to play. Someone help.

3 Replies:

I used to get Raynaud's (fingers crossed, i havent had any issues with it for a while now..but it isnt winter here yet).. and the only thing i found to help it was to try to keep my hands warm.. eg wearing fingerless gloves all the time or even full gloves. As I still suffered from cold fingers and hands with numbness and stiffness, even with gloves at times.. I also used to often put them in basin of warm water.. (and then put the gloves back on right away). It was a lot of work to keep my hands warm, but just something which I needed to do (otherwise I would loose all feeling in my fingers completely and couldnt use them, couldnt even drive). I guess thou you already are doing things like this? (I guess sitting with a hot water bottle on your lap, whenever sitting.. and having your hands resting on that, may help too)..................... edit.. on further thinking.. i never got any swelling with raynaud's (does that cause swelling?).. and im wondering if you could also be getting Chilblains in your fingers . Chilblains and raynauds can be caused by other illnesses.. so i guess that is what you are looking for, sorry i cant help there

Have you asked your doctor about fibromyalgia? It's a possibility, though I don't know how big of one. I was diagnosed with it a couple of weeks ago (although I've had it for years), and a website I went to (www.fibrohope.org... you might want to check it out) said that Raynaud's can be a symptom of fibro. My hands are cold all of the time and I have joint pain that started in my extremities and spread. I don't know about the rashes, but the joint pain and stiffness in the morning are symptoms, not to mention the Raynaud's. And all of my blood tests came back negative as well because it's a neurological problem. I really hope everything turns out well for you... I've played clarinet for five years (since I was 12), and although I've given it up for now because of the pain, the medicine has REALLY helped and I'm considering picking it back up. I hope you find out what's wrong, and I wish you the best at college.